10948614 tn?1414173719

Undiagnosed long term edema. Any input would be greatly appreciated

I apologize in advance if my post is lengthy but I'm trying to be as comprehensive as possible.

I've had a problem with generalized pitting (in my lower legs) edema for several years now without much by way of explanation from the docs. I'm hoping that someone in the forums might have a bit of insight or experience with a similar problems and can perhaps offer some advice.  I'm 45 yr old male, who's otherwise healthy, aside from the edema

I've seen a half dozen specialists and done quite a bit of research on my own but I still haven't a clue what's causing the malfunction. I've been screened extensively for heart, liver, kidney diseases, as well as more exotic possible causes like Lyme, Lupus, and Thyroid. But so far, everything has checked out normal. I was even sent for an MRI of my pituitary stalk to check for possible tumors or abnormalities. The two slight abnormalities that did turn up were very mild hyperthyroidism that seems to fluctuate between normal and slightly out or range and a low testosterone level which seems to worsen (as far as I can tell from libido), when the edema is raging

When the edema is at it's worst, I almost feel dehydrated. My mucus membranes seem to dry up and my saliva and underarm sweat production feel as though they slow down quite a bit. I even have some trouble swallowing, due to low saliva production, when the edema is severe. Doctors suggest a third spacing type phenomena. The edema in the lower legs is the pitting variety, and if I press into the tissue, a large dent/pit remains for several minutes, at least.

Doctors are all stumped and my next route is the Cleveland Clinic for a full workup by team of specialists.

My weight was on the low side prior to the fluid retention but is much higher since. I estimate that I'm carrying around about 20-30 pounds of fluid at this point. I have low blood pressure (110/70) and the cardiac evaluation was extensive with echo, stress test, detailed metabolic panel/lipid profile, etc. I saw a liver specialist and phrenologist for extensive workups, as well. But nothing was out of sorts.

Aside from specialty clinics like Mayo, where does a patient turn when they have documented abnormalities like this but without diagnosis and explanation? It all just seems very bizarre to me at this point. I'd always been under the impression that when a person becomes ill, the docs are supposed to offer a diagnosis, at the very least.

Being undiagnosed for so long has had a very negative effect on my psychological well-being. It would be nice to just communicate with someone who has some possible answers or perhaps experience with similar disorder.
14 Responses
1756321 tn?1547095325
I too had severe edema. My reasons: Hashimoto's thyroiditis, cellular thyroid resistance, insulin resistance, 25 cm ovarian cyst.
10948614 tn?1414173719
Thanks for the reply.

Has the edema resolved any, now that you've got a diagnosis? Mine's been constant for several years now. It's generalized throughout my body and "pits" in my legs. I also feel very dehydrated from the edema and my GP claims it's a case of third spacing, whereby fluids are drawn out of the vascular system into a "third space" between cells, which, paradoxically, makes the patient feel dehydrated/dry, despite the extra fluid. I refuse to take any diuretics, until I receive a proper diagnosis. Given that I'm only 45, I don't think it's a good idea to start removing fluid from my body artificially, when nobody has come up with an underlying cause yet

Of course, I've been checked for the usual suspects of heart, liver, and kidney diseases, etc but nothing was out of sorts. I've got some other issues with gastritis and GI stuff, but I didn't mention them in the post, because I just wanted to stick to the edema as that's my most troublesome symptom.

I've been flagged as mildly hyperthyroid on blood work (T4 just slightly out of range and TSH on the low side but within range)

My next step is an appointment at the Cleveland Clinic to hopefully get some answers. Personally, I've never come across a case of edema with no clear cause/diagnosis. Most people seem to have a known reason for their edema (ie: drug side effect, heart failure, kidney disease, etc). I just don't get it.....
10948614 tn?1414173719
BTW, which one of your disorders was the most likely culprit for the edema? I know that some forms of hypothyroidism can cause it but I've never heard about ovarian cysts being related. Obviously I'm not a doctor and so my understanding of edema and it's causes is limited to internet reading
1756321 tn?1547095325
If I could grade my odema from least to worst then it would be insulin resistance (high insulin retains sodium), cellular thyroid resistance, ovarian cyst (could gain 10 kg/22 lbs overnight) and then Hashimoto's thyroiditis (but this is combined with my cellular thyroid resistance issues).

While I had some mild pitting edema on my legs, most of my fluid retention was in my abdomen/belly. I looked like a end stage cirrhosis patient! My mother however has very bad odema in her legs and she is going in next week to start thyroid medication (she too has Hashimoto's thyroiditis).

I too have gastritis but that is due to autoimmune pernicious anaemia. There is an article from Hypothyroid Mom: "300+ Hypothyroidism Symptoms...Yes REALLY" which you might be interested in reading.
10948614 tn?1414173719
When you were full of fluid like that did you also feel dried out? My BP is low and all mucus membranes very dry, whenever the water retention gets out of control. My annoying doctor just calls it "third spacing", but doesn't go into much detail regarding specifics of why it's happening or where the fluid is being held. From my limited understand, the fluid gets lost in a "third space" beneath subcutaneous tissues, which leads to dehydration, paradoxically. I hardly urinate at all during the day, when I retain lots of water, and release most of it at night, while sleeping

BTW, I'm very mild hyper-thyroid, not hypo. As far as I'm aware, the hyper state doesn't include edema. I could be wrong about this, though

Thanks for commenting, btw. I've never talked about this with anyone but my doctor
10948614 tn?1414173719
Oh, BTW, when I say that I released the fluid "while sleeping", I don't mean to suggest that I'm peeing the bed or anything : ). I usually need to get up several times during the evening to urinate. I never had any issues with nocturnal urination prior to the edema
1756321 tn?1547095325
I had hyperthyroid symptoms on and off with early stage Hashimoto's thyroiditis.  I did have fluid retention with hyperthyroidism but I put that down to hyperthyroidism worsening my insulin resistance.  Not sure if there is any other reason so I had a look online and found a few articles talking about edema due to hyperthyroidism.

I did read that slow pitting time over 40 seconds is normoalbuminemic edema. The causes listed..

•Systemic venous hypertension
– Congestive heart failure
– Pericardial diseases, tricuspid valve disease

•Regional venous hypertension
– Inferior vena cava syndrome
– Venous thrombosis
– Lower extremity venous insufficiency
10948614 tn?1414173719
Hmm. Interesting. However, I've been extensively checked out by a team of cardiologist and according to them, the edema is not related to my heart. They could have missed something, though.

I don't think I have any regional or localized issues, as the edema is bilateral in my legs and very generalized everywhere else (i even have it my arms and neck, when it's severe). DVT and regional causes would be limited to my legs only, I think

The really odd thing about it is the dehydration/dryness. If I didn't know any better, I'd think I were having an allergic reaction, almost like a chronic anaphylaxis or something. The fluid seems like it displaces itself from my circulating blood into the layers below my skin, which makes me feel very dry. On the days when the edema is decreased, I am much better hydrated. It's really weird
1756321 tn?1547095325
I forgot to add magnesium deficiency and subacute kidney failure to my list of causes of odema.  If you pinched the skin on the top of your hand does the skin stay "tented' and go back to normal very slowly or does the skin go back down again quickly?
10948614 tn?1414173719
I'm at work, so I'll need to be brief. Yes, the skin tents and I have all the signs of mild chronic dehydration. But it's due to this third spacing, rather than low fluid intake. The fluid normally in my veins leaks out into third space, which makes me feel dehydrated, despite fluid retention. Not a single doctor has suggested a cause and I can't find anyone online with a similar profile. I've had very extensive kidney, liver and heart tests, but all came back normal. At this point, I just want an answer. I'm not even worried about the outcome. I feel that not knowing is worse than any possible disease. This rare disorder stuff is a very lonely business
1756321 tn?1547095325
Get back to work! LOL I have a rare autoimmune disease myself (juvenile autoimmune pernicious anaemia which is 100 per million) and I had to diagnose myself (in fact I've diagnosed almost all my medical conditions actually) but good thing I did as I would of been dead in about a year without treatment.  Okay well I found some info about third spacing...

"Relative hypovolemia: internal fluid shifting from intravasular to extravascular space (interstitial, third space) so that fluid is no longer available for circulation."

"Causes of Relative Hypovolemia

Relative or distributive hypovolemia can occur in the following situations:

* Vasodilation with an increase in the volume of the intravascular space with insufficient blood volume to fill this space and therefore a drop of blood pressure (orthostatic hypotension 2, vasovagal syncope 4, neurogenic shock due to spinal cord injury 5, sepsis, anaphylaxis, side effect of barbiturates and antihypertensives 5)

* Internal bleeding 3

* Non-circulating blood within the vascular system (aortic dissection)

* Decreased blood volume in the arteries (arterial hypovolemia) in heart failure 10

* Decreased oncotic pressure of the blood plasma due to low blood protein levels and hypoalbuminemia (nephrotic syndrome with anasarca 3,8, protein malnutrition [Kwashiorkor] 12, ascites — accumulation of the fluid in the abdominal cavity) 8

*Shift of water from the blood into the body cells (in hyponatremia)."
10948614 tn?1414173719
Busy weekend for me so far, Red Star, so I didn't have any time to check my messages and reply to your post. Thanks for the detailed causes list. I'll have to look into more detail on some of them later.

I called my doc yesterday and she's suggesting a sleep apnea test and then a cortisol stimulation test to check the adrenals. I'll keep you updated. Hope you're feeling well
1756321 tn?1547095325
I've had sleep apnea due to untreated hypothyroidism and chronic low grade adrenal insufficiency which worsened drastically with severe vitamin B12 deficiency and again due to a two month bout of hashitoxicosis. Why am I not surprised both conditions list fluid retention as symptom lol.

I posted another answer on the adrenal home tests. At my worst my pupils used to fluctuate so fast in the light it wasn't even a second in between opening and closing (fluctuating pupils in the light is a sign of low aldosterone) and the white line on my belly spread over 2 inches. This makes sense if you read the tests. :)

1756321 tn?1547095325
Btw the info I wrote on that old answer was from an adrenal website stating there was no fluid retention with adrenal fatigue but that looks to be inaccurate. :)
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